Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

I have had this conversation with my doctor and we both have come to same conclusion - stigma surrounding the disease. It boggles my mind when people who engage in "high risk" behaviour don't get regularly tested. It bothers me so much when I hear of people only finding out their status after almost dying or PCP or the like. I am not judging, because God knows how scared I was every 6 months I got tested, but it would behove the medical community to push for testing at the time of a yearly physical.

I don't know, maybe I am dumbing down the issue, but why don't more physician push for testing in their patients?

I was actually tested for HIV as part of my yearly check up (or rather my first visit with a new doctor) when I was diagnosed. Of course, he asked my permission before taking the test, but I didn't even hesitate in replying "yes". Oddly I didn't even lose a night's sleep waiting for the results, but alas my first HIV test came back positive. If you play, you pay.

I can't help but think that the special status so many want to attach to hiv testing is part of what fuels the stigma. It's that old vicious cycle. The more we hide, the more we have to hide and all that.

The pilot studies being done in DC and (I think) the Bronx are trying to address this. People also seem to have forgotten that back in September, 2006, the CDC changed their hiv testing guidelines.

CDC: Routine HIV Testing Recommended for all U.S. Residents

By Tim Horn, Senior Writer & Editor, AIDSmeds.com

HIV antibody testing should be a regular part of the medical care of all adolescents, adults, and pregnant women, according to new federal guidelines published by the U.S. Centers for Disease Control (CDC). The new guidelines, released September 21st, highlight a number of important recommendations to increase awareness among those who are infected with the virus but do not yet know they are positive and, as a result, lacking the benefits of counseling and care.

The CDC estimates that, despite ongoing prevention efforts, the number of people being infected in the U.S. has lingered at 40,000 annually. Moreover, nearly 40% of HIV-positive people do not learn of their infection until they have AIDS or advanced HIV disease, meaning that they likely remained unaware of their HIV status – and were potentially exposing others to the virus – for several years. By increasing access to testing using rapid and highly sensitive assays, the CDC argues, counseling and care can be promptly provided to reduce the risk of transmission and to protect patients' health before they progress to AIDS.

"We're very happy that CDC is taking this important step," said Daniel R. Kuritzkes, MD, Chair of the Infectious Disease Society of America's HIV Medical Association (HIVMA). "We see far too many patients who were never tested for HIV before they became sick with AIDS. Routine testing will help identify more people with HIV who don't know they are infected."

One of the most significant revisions to the guidelines involves who should be tested. Past guidelines stressed counseling and testing people perceived to be at risk for HIV infection, notably men who have sex with men and intravenous drug users. The guidelines now recommend routine testing all U.S. residents between 13 and 64 years of age, regardless of their reported risks.

The new CDC guidelines also take steps to remove barriers to testing. Until now, testing for HIV has been treated differently than for any other disease, requiring a separate written consent form and extensive pre-test counseling. The new guidelines suggest that these steps are no longer required. The new guidelines also call for the testing of patients in all healthcare settings, including primary care doctors' offices (e.g., during routine physical exams), public health clinics, emergency rooms, and prison hospitals.

While the guidelines no longer require written consent by the patient before testing, the CDC strongly emphasizes that HIV testing be voluntary and undertaken only with the patient's knowledge. The guidelines advise that patients be informed that HIV testing is now part of routine care and that they have the opportunity to decline testing. Before making this decision, patients should be provided with basic information about HIV and the meanings of positive and negative test results, and should have the opportunity to ask questions.

"Patients go to their doctors expecting to be screened for heart disease, cancer, sexually transmitted diseases, or other conditions," said Michael Saag, MD, of the University of Alabama. "But no one signs a form to get a prostate exam. We need to make sure that patients are informed about the HIV test, but we should not put obstacles in the way of testing."

While recommendations to increase HIV testing are being heralded as a vital public health strategy, there are also concerns that the U.S. healthcare system is already overburdened and not readily prepared to deal with an increased number of people diagnosed with HIV in need of treatment and expert medical care. "The programs they rely on to provide them with care are already bursting at the seams," Dr. Saag said. "Providers are overworked and burning out. Funding is too short to hire more staff, even as the caseload keeps increasing all the time. We're on the brink of a crisis in HIV care in this country."

Increased testing is the right thing to do, Dr. Kuritzkes added. "But Congress absolutely must back up increased testing with funding to match." Overburdened HIV-care providers, people living with HIV, and advocates need to make this a priority issue, he said. "Tell Congress to reauthorize and adequately fund the Ryan White CARE Act and expand access to Medicaid to ensure that those who are newly identified with HIV receive the care and services they need." source

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Because neither the general population nor most counties' health systems want to deal with the consequences.

I still can't understand how you think not testing makes it any better. Maybe I'm wrong, (and I'm sure you'll delight in telling me if I am wrong) but I get the impression that you think people should not be encouraged to test as a matter of routine and the government or other health authorities should not be pushing the issue.

The consequences of late diagnosis are much more dire than early diagnosis. Early diagnosis saves both lives and money. Early diagnosis saves onward transmissions. Not testing doesn't make hiv go away.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"Perhaps because the consequences of being diagnosed with HIV is so different than being diagnosed with anything else?

People with HIV are criminalized in a manner unlike persons with other diseases that can be spread through blood or sex, e.g., HBV, HCV.

People with HIV are frequently denied health and life insurance despite a purportedly normal life span.

People with HIV are denied entry to the United States, at least until President Obama's order takes effect in January 2010. This is not true of people with heart disease or cancer.

People with HIV have a much harder time with normalizing their immigration status, again unlike viral hepatitis or other diseases.

Many states STILL continue to ban or discourage people with HIV working in fields ranging from healthcare to cosmetology"....quote

As I remember it....this was an arguement to retain anonymous testing and reporting. Now that reporting of HIV tests is mandatory in some states, I think the problem of people not testing has gotten worse. Still, I would choose to test as I KNOW that I am in a high risk group. AND I want to be in charge of my health care. I could still test anonymously here if I wanted to. People just want to stick their heads in the sand.

I recently told a good friend of mine about my status and we actually had a conversation similiar to this.

My question to her was don't you think that all pregnant women should be tested and her answer was no. If she chooses to ,that is a different story, but to make it mandatory is taking away her rights.

My argument was wouldn't it be in the best interest of the baby to know before the baby was born but she kept telling me it took away the rights of the mother.

My issue is what about the rights of the children, there is something that can be done during pregnancy to prevent them having to deal with this disease everyday for the rest of that babys life.

I heard of a story about a women who poz, got pregnant, had a poz little girl, eventually she and the little girl went on meds but she never told the girl what for, the little girl grew up, got a boyfriend and got pregnant young, infecting both the boyfriend and the baby. Who is more wrong the mother or the daughter? The mother for not telling or the daughter for not asking? My guess is the daughter probably did ask, more than once, and the mother lied for whatever reason. It just shows me how selfish people can be, instead of going out of her comfort zone and letting her daughter know the real deal, she sat back and watched her daughter get herself in the same situation she is in. Part of me finds it hard to believe that the daughter never found out what her meds for on her own, but seeing that I have been in a manipulative relationship myself before ,I can see how it might happen.

I have also heard a lot of people just rather not know, my friend said it to me herself. It's like the elephant sitting in the middle of the room, everyone sees but says or does nothing about it.

Personally, I think everyone should get tested, no matter their risk, race, sex, if your human, hold out your arm. Everyone is taking thier rights way to far, if your rights affect or infect another human being, then it is wrong.

I've often wondered why it isn't part of a routine physical. I understand the hesitation because of discrimination issues. Why couldn't it be mandatory that a doctor ask you when they are filling out the blood work forms. I think a lot of people would be more comfortable saying a one word answer "YES" or "OK" as opposed to having to get up the nerve to ask for it.

I've often wondered why it isn't part of a routine physical. I understand the hesitation because of discrimination issues. Why couldn't it be mandatory that a doctor ask you when they are filling out the blood work forms. I think a lot of people would be more comfortable saying a one word answer "YES" or "OK" as opposed to having to get up the nerve to ask for it.

Or an "opt out" system, where hiv is routinely tested for any time someone has a CBC done. If you don't want the hiv test, you have to state that specifically, without necessarily being asked by the doctor.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

This isn't the dark ages, where people didn't really think about HIV. HIV is a well known malady, has gotten lots of press, and isn't just a "gay" or "junkie" disease anymore (and really hasn't been for years). People should get tested, so the CDC's prediction of millions more becoming infected can stop or slow down at minimal.

I mean, I think most people would rather live with HIV, than die from uncontrolled Aids. Things are different now, times have changed, medicine has changed, and people need to get with it.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I still can't understand how you think not testing makes it any better. Maybe I'm wrong, (and I'm sure you'll delight in telling me if I am wrong) but I get the impression that you think people should not be encouraged to test as a matter of routine and the government or other health authorities should not be pushing the issue.

You read me opposite. The question was - why isn't testing routine?I think it should be. The general population resists this idea because of fear and stigma. Governments may "say" its a good idea (CDC for instance), but are they ready to shell out for the treatment when push comes to shove? The governments have heads buried in politics, fear, and sand. Wonder who will foot the treatment bill for the Bronx and D.C., for instance, if all HIV infections were revealed.

Got it now?

Logged

ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

I think HIV testing isn't routinely done because most people do not, in fact, think about it (this isn't true in all cases or in all populations, but in general). It may be well-known, and in the press alot, but the average person doesn't consider themselves at risk, so don't pay any real attention and it doesn't sit on their minds.

The burden really should fall on the doctor's to order the test -- or at least OFFER it. I suppose that, technically, you have a right to say no to any test the doctor wants to order, but most do not even ask when sent for "routine bloodwork". If it was offered during physicals (which aren't yearly for many, due to insurance constraints), many more would probably be tested.

Sometimes it is ignorance of the disease, lack of risk factors and ignorance/denial of the medical community. My wife was very ill, had multiple infections, went through 11 doctors, tens of thousands of dollars in tests, biopsies ,MRI'S, CT's, etcetera, went to the hospital several times and was never tested for HIV over a two year period until she ended up in a big city hospital, in a wheel chair at half her body weight. The quacks here kept saying she had to have cancer to be so sick, but they just can't find it. Turns out it wasn't cancer. Hello...., It is time to consider blood transfusions a risk factor. HIV testing should be mandatory. it is a good way to get you on track to keep the virus in check. Finding out when your CD4 is less than <20 is a little late. Screw opt out. The quick test is only $7.00.

I like Ann's opt out approach. At least if the doctor was familiar with the persons sexual habits they could recommend it and discuss it further with the patient if the answer was still NO. Due to the risks of being positive involved I don't know my feelings on it being manditory. I may have changed my mind on that.pos2007: If I can ask a question? Do you think your wife would have said YES to a doctor who asked if she could tested for HIV after the first few tests she was given came back negative?

When I got tested I was tested with the finger prick test. I got counseling before they tested, immediately after I was told I was positive, an hour after they told me and when I went back to pick up the blood test results 10 days later. I was even counseled when I went to my local aids group. They didn't tell you it was counseling but the questions they asked were more probing than the usual "Hi how are you doing?"

I think HIV testing isn't routinely done because most people do not, in fact, think about it (this isn't true in all cases or in all populations, but in general). It may be well-known, and in the press alot, but the average person doesn't consider themselves at risk, so don't pay any real attention and it doesn't sit on their minds.

The burden really should fall on the doctor's to order the test -- or at least OFFER it. I suppose that, technically, you have a right to say no to any test the doctor wants to order, but most do not even ask when sent for "routine bloodwork". If it was offered during physicals (which aren't yearly for many, due to insurance constraints), many more would probably be tested.

Mike

I agree with this 100%. I didn't test as often as I should have; I was also in a high-risk group (multiple male partners). I was always 'safe-ish' and still don't know when I was infected. Really, no single incident sticks out in my mind.

On one hand, we have people who think that HIV has been all but cured in the US and that it's only an issue in places like parts of Africa. HIV in the US is not in the forefront of new often... at least from what I've seen. It's not the topic of movies, songs, etc like it was in the early years. Hell, even all the 'project red' things I see are for countries in Africa. People just don't think it's a problem here and aren't really all that concerned about it.

Perhaps because the consequences of being diagnosed with HIV is so different than being diagnosed with anything else?

I think it's quite simple -People just don't want to know.About HIV or a slew of any other diseases, illnesses, or conditions.

Although I would like good health, and I do go see my doctor, I'm not certain that I "want to know" everything wrong with me either. I know that is stupid; but that's my human reaction. I may have grudgingly been tested for some things, and are now being treated; but there are other tests that the doctor mentions that I side-step answering and so nothing happens. Because it's my choice to die from whatever I don't want to know about. I really don't want to know if I have prostrate cancer, therefore I haven't gotten checked out for that.

Why, clear back in 1990, while all our friends were beginning to die around us, neither Randy nor I got tested for HIV for years. Who wanted to know for sure that they were going to die of an incurable illness? It wasn't until Randy was already sick, that I got tested - and he still didn't get an HIV test until months after that when he was deadly sick and admitted to the hospital.

Though at that time, it was just beginning to be more "popular" to get screened for cancer. In the years prior to that, absolutely no one would have "requested" a test for "the big C" (which had just as much stigmatization back then as has surrounded HIV. lordy I'm so old I do remember in the early 70s when we whispered about cancer and thought it was contagious)

It's one thing for the doctor to treat my complaint du jour when I'm in his office. It's quite another thing to have a test done and find that my life is going to be drastically altered or that I'm actually on the verge of death. Sometimes I just don't want to know the bad news. I fully understand that knowing early can save my life (as an example, testing might have saved the life of my last partner, just a year and a half ago, who found out in the hospital and was dead two months later); but quite frankly, I've also had a lot of other bad news in my life and there's only so much I'm emotionally and mentally able to handle. Like everyone keeps telling me to do (especially after the deaths of my partners) "Don't worry about tomorrow", "live in the moment that you have", "live for today". So I am and I just don't really want to know about what health horrors tomorrow is going to bring.

Stupid? yes. Normal human reaction? probably yes

I think the stigma and dread surrounding getting tested and finding out you have any of a multiple of illness would be lessened if Americans had a basic health plan. Not so much that we were "forced" into being tested (I like that "opt out" option), but that these tests were financially covered, and everyone was having them, and so why not you too - especially if treatment was available (although that still wouldn't reduce all the fear of the unknown because many of us can attest to the fact that getting tested and treated didn't end the horrible damage this disease inflected upon us and how it ripped out lives apart anyway).

I know the OP discussed HIV testing, and I talked more about just testing in general. IMHO It's a shame that HIV was allowed to be treated so "special" (with anonymous testing, special permission required to "add" HIV testing into a normal testing panel, etc) which allowed the "scary disease" to frighten off people from being tested. But unlike cancer, HIV is communicable and people really do need to be tested to help stop the spread of this terminal disease. It's also a shame that the general opinion of HIV has become that it's a "chronic, manageable" illness, because now people can feel less compelled to get tested. Why if it's no worse than other chronic, manageable illnesses, say diabetes, what does it matter waiting a year or two to get tested?

Personally, at this point in my life, having been through what I have, at my current level of health/sickness and knowing what I know, if I would get tested and found to have prostrate cancer, quite frankly, I just wouldn't treat it. I've already almost been dead a couple of times, and don't fear it as much as I did years ago, when I had more life ahead of me and better health. Testing and health care decisions are all actually quite individualized and personal. Deciding what diseases you really want to be tested for all depends on your current age, mental/emotional state, and current state of health - rather than how your possible disease could be affecting others around you.

I'm sure that nearly everyone in this thread could probably go take some test/scan/exam next week for something that they "could" have; but how many of us won't, because we don't really want to find out that we have "that". Just like a lot of people don't want to know if they have HIV

Also, routine CBCs are looking for a "myriad of diseases" because a "myriad of diseases" can be flagged through a routine CBC. That's why they're done, for goodness sake. I have to differ with you that a CBC will flag the possibility of HIV. That would depend on how well the doctors interperet the tests. my wife was diagnosed as pancytopenia ( low red and white blood count on many occasions by 11 doctors, two hospitals over 2 years. The records and tests are several inches thick. They kept saying the only way she can have pancytopenia is because she has cancer. No cancer was ever found. It ended up being HIV. There is no substitute for an HIV antibody test. It sucks having full blown AIDS before you are diagnosed.

For one thing, for a single gay man whose life involves a lot of dating or casual sex, getting tested positive is the end of all that. Every time he goes onto an online dating site and sees a profile with something like "you must be negative!!!!!!"---and I am quoting that line verbatim, from an actual profile that I saw a couple of days ago, including the string of exclamation points, and some are far ruder about it---he is reminded that he is, until he gets tested, on the "happy" side of a chasm. He is still one of "us" rather than one of "them". Is he really going to be eager to volunteer to join the ranks of "them"? Before it's necessary? When he knows that then he will never again be able to go to a bar or club and have the kind of spontaneous, carefree encounter he was used to having? Because the the disclosure question really does mean the end of that. So I can see very clearly why someone who is, say, twenty-five would take an "I'll think about that tomorrow" attitude towards the question. Is he going to be impatient to end the lifestyle from which he is accustomed to deriving all his fun?

Secondly, finding out that one has HIV is a hugely stressful episode. Most people I know are constantly busy and under stress. How easy is it to say "I wouldn't have time to deal with that right now. I'll wait until my life is more settled." I can easily see someone procrastinating in this way, year after year.

If people aren't thinking about HIV, I don't think it is in a careless way, but rather in a resolute "If I really think about it I'll go crazy so I'm going to banish it from my mind" sort of way. Look at all the people who post on the "Am I Infected?" forum filled with terror after absolutely no-risk or very, very low-risk incidents? Apparently the terror of HIV is constantly in the back of the minds of most sexually active people. In those cases there seems usually to have been a combination of something illicit (a married man visiting a sex worker) and some sort of illness; that apparently is all it takes to awaken the fear.

Obviously, I know the point is that people should not be going on and on in ignorance of their status until suddenly they get pneumonia at a point when they only have 25 t-cells left. I don't understand why there isn't more success with education about a) safer sex b) not creating stigma around people who have HIV and c) getting tested if one's activities are such as to make testing a reasonable thing. I really wish there would be less fear and anxiety around the whole issue.

It also seems to me that there is more nervousness around HIV than there was ten years ago and that there is also more defiant celebration of unsafe sex. I don't understand it, but that's what it looks like to me.

But this being the situation we're living in, I really don't think a test should be thrust on someone who isn't ready for it emotionally. What if you sprang a positive test result on someone who happened to already be really depressed at that moment? I testing should be a conscious choice, although education that encouraged testing is a really good idea.

Finally, there's something that I think needs to be thought about more. In my case, I had only quite safe sex throughout my twenties, yet I was always, in the back of my mind, worried about HIV. Finally, after a marginally unsafe incident, I got tested, and turned out (of course) to be negative. I breathed a sigh of relief--and somehow I think my attitudes became more casual after that. About a year later I had unsafe sex, once, and became positive. I somehow don't think that, in the frame of mind I was in before my first HIV test, I would have done that. And I am not the only one. I've met a number of people who got tested, turned out to be negative, and then did something unsafe and became positive. Is there something psychological going on here that needs to be examined more deeply? It would be terrible to push lots of people to get tested when they aren't ready if in some tragic irony getting a negative test result led to increased levels of unsafe sex.

Also, routine CBCs are looking for a "myriad of diseases" because a "myriad of diseases" can be flagged through a routine CBC. That's why they're done, for goodness sake. I have to differ with you that a CBC will flag the possibility of HIV. That would depend on how well the doctors interperet the tests. my wife was diagnosed as pancytopenia ( low red and white blood count on many occasions by 11 doctors, two hospitals over 2 years. The records and tests are several inches thick. They kept saying the only way she can have pancytopenia is because she has cancer. No cancer was ever found. It ended up being HIV. There is no substitute for an HIV antibody test. It sucks having full blown AIDS before you are diagnosed.

No one said that a CBC will flag HIV, rather it was stated that a CBC can flag a "myriad of diseases" -- meaning many diseases. I doubt that HIV is one of them. It did flag your wife's pancytopenia though. What it couldn't do is identify the cause of it. A CBC can also flag anemia but, again, not it's cause. Having performed thousands and thousands of CBCs, I can tell you, they are good at identifying issues and/or potential issues that require more specific follow up testing.So, you are correct that there is no subsitute for HIV testing.

Another thing to be thinking about with "routine HIV testing" (which I DO think is a good idea), is that there will be much mental anguish for folks who screen positive but end up negative on confirmatory testing and we can see in the Am I Infected forum how this sort of thing can really screw people up. This is not to say it shouldn't be done, but there are unintended consequences.

Nestor, you made some good points. Maybe a cheap home test would help. Educating people so they know that they can do well if they receive treatment before their immune system is wasted might help reduce some of the fear and stigma.

I have to differ with you that a CBC will flag the possibility of HIV.

I never stated that having a CBC will diagnose HIV. If you read my post again it stays "flag the POSSIBLITY" . This is an HIV website. Suggesting having a CBC test instead of an HIV test is suggestive that a CBC test might indicate the presence of HIV. If you are recently infected, I seriously doubt that. IF you have no common risk factors the doctors will not look there. Having spent our entire life's savings and retirement over a 4 year period for uncovered tests, hospitalizations, and 26 CBC tests I can attest that the doctors don't look for HIV. I have no doubt our life would have been a lot easier if we had been more aware of HIV, and been tested years ago. And Yes I think a CBC is a cheap and useful tool for a lot of other disorders too. Either doctors need to broaden the scope that they look at, or an HIV antibody test needs to be added to the CBC.

The home test I took was relatively cheap. I did it because I thought I was just paranoid again. It turned out I wasn't. I stick to my original statement, to go for a check up is to expect to hear how you are doing medically. I think it is much cheaper to treat people early on then incur the cost of a lengthy hospital stay due to PCP.

Also, routine CBCs are looking for a "myriad of diseases" because a "myriad of diseases" can be flagged through a routine CBC. That's why they're done, for goodness sake. I have to differ with you that a CBC will flag the possibility of HIV. That would depend on how well the doctors interperet the tests. my wife was diagnosed as pancytopenia ( low red and white blood count on many occasions by 11 doctors, two hospitals over 2 years. The records and tests are several inches thick. They kept saying the only way she can have pancytopenia is because she has cancer. No cancer was ever found. It ended up being HIV. There is no substitute for an HIV antibody test. It sucks having full blown AIDS before you are diagnosed.

As Mike points out, I never said that a CBC will flag hiv. It won't. However, it will flag many other illnesses, as Mike also points out. Leukaemia is another that comes to mind. Obviously, additional tests are usually needed to confirm a diagnosis of illnesses that a CBC might flag, but the point remains that CBCs are done to look for presence of illnesses. This point was raised because Mecch stated that hiv shouldn't be singled out. It isn't.

And in that same vein (no pun inteneded), there are other illnesses that are routinely screened for. I already mentioned TB, and you can add to that breast cancer and cervical cancer in women and testicular cancer in men. (At least here in the UK, men are routinely checked for testicular cancer. In the high schools, they have assemblies - attended by both boys and girls - where they are taught how to check for TC and fake testicles are passed around to illustrate what a normal testicle feels like and what a lump feels like. The girls are included because... well, girls often fondle testicles! )

I have to differ with you that a CBC will flag the possibility of HIV.

I never stated that having a CBC will diagnose HIV. If you read my post again it stays "flag the POSSIBLITY" . This is an HIV website. Suggesting having a CBC test instead of an HIV test is suggestive that a CBC test might indicate the presence of HIV.

And if you read MY post, you will see that I suggested that routine hiv tests are run when routine CBCs are run. Simultaneous, at the same time, concurrently; NOT a CBC INSTEAD of an hiv test.

I've been poz for twelve and a half years, never on hiv meds, and you'd never know from my CBC results that I have hiv. I would never in a million years suggest that a CBC be run INSTEAD of an hiv test.

Ann

edited to add emphasis and therefore clarity - as well as adding additional information on checking for testicular cancer in the UK

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Another thing to be thinking about with "routine HIV testing" (which I DO think is a good idea), is that there will be much mental anguish for folks who screen positive but end up negative on confirmatory testing and we can see in the Am I Infected forum how this sort of thing can really screw people up. This is not to say it shouldn't be done, but there are unintended consequences.

I agree with you here, Mike. But to not implement routine hiv test because of this possibility (and I'm not saying YOU are suggesting this) is to throw the baby out with the bath water.

When this happens in Am I and we have to pick up the pieces, it is exceedingly frustrating. What usually happens is that the proper follow-up tests are not being done before the patient is informed of their positive test results. And they're not just being informed of their positive test results, they're being told "YOU ARE HIV POSITIVE", period, end of story. What's needed here is a change of how positive test results are handled by the doctor or organisation doing the testing.

A person should NEVER be told that they are hiv positive following a positive result on a rapid test. What they should be told is that there is a possibility and they need further testing. When testing is done with a vial of drawn blood (non-rapid), a WB should be run immediately before the patient is ever told of the positive result. Still not perfect by any means, but it's a damn sight better than a person being told flat-out that they're hiv positive based on one test.

This sort of thing (tentative diagnosis as opposed to definite) is done all the time with other illnesses such as cancer. While a preliminary test might point to cancer, a patient is never told that they definitely have cancer until the follow-up tests are done and the doctor is sure of the diagnosis. The patient might be first told that there is a possibility of cancer, but additional tests are needed to confirm. It often doesn't work this way with hiv. All too often hiv diagnosis is handled in a very insensitive manner. If cancer diagnoses were routinely handled in such a cavalier manner, there'd be a world-wide outcry.

So yeah, while I'm all for routine testing, work is needed on testing protocol. The medical profession, as a whole, is in dire need of hiv awareness training.

For example, we recently had a young woman in the Am I forum who claims to work in some sort of center that does rapid hiv testing on demand. I'm guessing she works in a homeless shelter, but that's really neither here nor there. The point is, she displayed a deep ignorance of all things hiv - even though she is the person who actually administers the tests, and presumably gives the results to the patient. It made me want to cry. You wouldn't have a person who knew nothing about cancer performing cancer tests on people and giving them the results, so why is it considered ok to have someone who knows nothing about hiv to perform hiv testing? It boggles the mind.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think HIV testing isn't routinely done because most people do not, in fact, think about it (this isn't true in all cases or in all populations, but in general). It may be well-known, and in the press alot, but the average person doesn't consider themselves at risk, so don't pay any real attention and it doesn't sit on their minds.

I think a big part of the problem is the emphasis put on "risk groups" as opposed to "risk activities". I know that was a problem in my case. I didn't think I was part of a risk group and neither did my doctor. That led to me running around for four years before I got my diagnosis, despite being extremely ill during my seroconversion. My doctor actually told me, post-diagnosis, that if I had been a gay man when I came to him with my serious, mystery illness, that he would have tested me for hiv. And yes, he admitted that hiv did cross his mind, but he discounted it because I wasn't in a "risk group". What he should have done was asked me if I'd ever had unprotected intercourse. He should have been thinking activities, not people. The "risk group" mentality is a very dangerous way of thinking.

Hindsight is a wonderful thing, eh?

That's why in my work in Am I, I always jump on someone who says they had sex with a "high risk person". It's not WHO you do, it's HOW you do it. That's where the emphasis needs to be in hiv education. People are not risky or "safe", ACTIVITIES are risky or not risky. We're doing a great disservice any time hiv education trots out the "risk group" line. I wish I'd known that years ago, I might still be hiv negative.

The only true "risk group" is that group of people who have ever engaged in unprotected anal or vaginal intercourse. And let's face it, that's a HUGE group of people. This is the message we need to be putting out there. If a person has ever had unprotected intercourse, they've been at risk for hiv infection and they need to be tested.

We've REALLY got to change this "risk group" mindset and change it to a "risk activity" mindset. It would be a huge leap forward in hiv prevention.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think a big part of the problem is the emphasis put on "risk groups" as opposed to "risk activities". I know that was a problem in my case. I didn't think I was part of a risk group and neither did my doctor. That led to me running around for four years before I got my diagnosis, despite being extremely ill during my seroconversion. My doctor actually told me, post-diagnosis, that if I had been a gay man when I came to him with my serious, mystery illness, that he would have tested me for hiv. And yes, he admitted that hiv did cross his mind, but he discounted it because I wasn't in a "risk group". What he should have done was asked me if I'd ever had unprotected intercourse. He should have been thinking activities, not people. The "risk group" mentality is a very dangerous way of thinking.

Hindsight is a wonderful thing, eh?

That's why in my work in Am I, I always jump on someone who says they had sex with a "high risk person". It's not WHO you do, it's HOW you do it. That's where the emphasis needs to be in hiv education. People are not risky or "safe", ACTIVITIES are risky or not risky. We're doing a great disservice any time hiv education trots out the "risk group" line. I wish I'd known that years ago, I might still be hiv negative.

The only true "risk group" is that group of people who have ever engaged in unprotected anal or vaginal intercourse. And let's face it, that's a HUGE group of people. This is the message we need to be putting out there. If a person has ever had unprotected intercourse, they've been at risk for hiv infection and they need to be tested.

We've REALLY got to change this "risk group" mindset and change it to a "risk activity" mindset. It would be a huge leap forward in hiv prevention.

Ann

Ann,

Truer words have never been spoken. There is a TON of work to do because we have members in this very forum who need to make this change in thinking. I remember back a bit when there was a thread on the permanent ban for donating blood by any man who has had sex with another man, even once, since 1976, here in the US.I advocated for a change to activity based derferments and a larger number of people in this forum than I would have thought were against this. They insisted that gay men should be banned because of our high-risk group. It was the same reaction that I got back in 1995 when I wrote a paper on this in graduate school. My professor basically thought I was nuts to expose such a risk to the population (although he DID give me an A, because he couldn't fault my reasoning or research). HIV isn't out there looking to jump into anyone because of who they are -- HIV finds a way to infect someone because of what they do.So -- this is going to be a tough nut to crack. Although, "tough" doesn't mean "impossible".

i notice that those of us that were alive in the 80's and in our late teen's to 20's we saw what was happening, we got tested becuase we learned that knowing was better then not knowing, post meds, this was more true obviously. Now the kids in the teens and 20's they dont' know about HIV. I forget that people dont understand HIV like I did when i was 20. every american house got a booklet in the mail from CDC outlining how it was spread. anyone rememer that? I read it in terror in privacy of my car. still scared to death of gay let alone HIV. anyways i survived 20 years without it and let my gaurd down and got it. I was being tested every 6 to 12 months so I was diagnosed early. but reading people numbeers on here seems like most people these days get diagnosed with OI's i think testing should be routine

I agree with Ann and have discussed same w/ my local HIV/AIDS Care Coordinators & prevention & education folks. I also think that we as a CommUNITY should talk about, be unified & identified by the whole HIVe rather than a NAPWA... After all; we all have one but not necessarily the other!

Michael

Logged

"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Ann, you have made made a VERY VALID POINT when you say risk groups. when I question why my wife had never been tested for HIV until after going through 11 doctors, 2 hospitals, pneumonia, kidney failure, thrush seven times, numerous sinus infections, and losing 80, lbs, of her body weight, and being gravely ill for 4 years. I was told it was because we did not fit into any risk categories. what the !#!#$??? Makes you wonder why we go to doctors and not a psychic. Married 25 years, no other sexual partners, no drug use, and white. blood transfusions were not considered in a "risk category" because the blood supply is considered safe.

poz 2007, what the hell did all those doctors think she had? Plus even if she was not in a high risk group you would think they would have done it to rule it out. I had 2 infections in my face and 1 under my finger nail all the 6 months before I was diagnosed. none of the dr's were going to test me for hiv either. I of course being gay and aware was allready getting myself tested every year.

They kept saying she had cancer but couldn't find it. Cat scans, pet scans, pancreatic biopsies, multiple bone marrow biopsies, endoscopies, MRI's, they never found any cancer. Turns out it wasn't cancer. Further reason why the risk factors, stigmas crap pisses me off. I even finally got mad at the last internist I hand delivered him a letter and told him I thought he should start thinking outside of the box. Some of these smaller regional doctors and Hospitals need to get their heads out of the sand. I had Shingles at 49 years old. come to find out that is an early warning sign too. I wasn't tested when I went in for that either. It is almost like a reverse discrimination. Never tested with my annual physicals either. The system seems to think: If you are gay you have to be at high risk for HIV. Not if you are safe. If you are Black you have to be high risk. Not if you are safe. If you are white you are not at risk . bull sht. If you are heterosexual you are not at risk Bull sht again. A screwed up system of denial and ignorance. Am i pissed that I have HIV. No. Am I pissed I wasn't tested? yes. Am I pissed that I was so uneducated about the disease ? Yes. Would I have gotten HIV if there had been routine testing years ago? No, because we would have known my wife was pos. and I would have used protection; after all , it is my job to try to stay healthy to take care of her.

wow, what a story.. i feel for you and your wife... ur right.. i am sure they are not testing people that they should. I can't believe that she went on so sick for so long and they did all those tests, did they do cd4 on her? couldn't find the cancer... man. I hope you are both doing much better now.

Did a CD4 when I finally took her to St. Louis. First came back <50, then they did are more precise test, it came back<20. She is doing pretty good now. Still pretty tired but has finally hit 200 . She gained her weight back, can cook meals, change the beds, drives me back and forth to the doctor and hospital. Got her cataracts fixed so I don't have to read everything to her any more or lead her around by hand. I have been holding my own and up 290 It appears I may have beat prostate cancer this year, got rid of the tumor in my chest. Just trying to get myself back together after 5 surgeries this year. Keep getting denied disability so I have got to get strong enough to work again; after all, I have 17 years left to retirement age. You can see why I am a very adamant advocate of HIV testing and education and why I think that the stigma needs to be ended with education. My medical bills alone this year would have paid for 10 years of HIV meds and HIV testing, easy. Prevention, and early intervention is much more economical and healthier than waiting until you have AIDS and your immunity has been decimated. My wife's bills over the last 6 years have totaled several times mine. i am kind of surprised how many people have pm'd me and mentioned that our case sounds like the 1980's all over again. HIV education needs to move ahead in this country. If you watch the news, you would get the impression that the only place there is HIV or AIDS is in Africa. Outside of forums like this and a few fundraisers , HIV is buried in this country. Awareness and education is non existent in rural areas outside major metropolitan areas. I guarantee, If I had been more aware and educated, I would have demanded the doctors do an hiv test years ago. Lymes disease was tested. I had actually read and heard more about LYmes disease than HIV. why not HIV? Which is more common? Thanks for everyones good wishes.

They do recommend you see a dentist every year and stick your arm in the blood pressure cuff at Walmart every other year.

But few men get an annual physical, so using the physical as an HIV annual testing opportunity is not likely to work out too well.

I agree with Mike though that when you do go in for a physical it should be a routine part of the exam. Patients should not need to be specialists in medical care to know what tests to ask for.

Absolutely. I know how doctor-phobic many men are. (And it does my head in! The stories I could tell about men friends who ended up sicker than they had to because they wouldn't go to the doctor with early warning symptoms. And I'm not even talking about hiv! Most recently, a friend ended up with a quadruple by-pass that could likely have been avoided had he taken my and his wife's advice a year earlier when he started feeling unwell and gone to the doctor. But no, he's a man, and men don't do doctors until they're on their death-bed. )

Maybe the answer is for dentists to offer routine hiv testing. They are trained doctors, after all, they're just trained to concentrate on the mouth. There's even a logical tie-in because of all the ways that hiv can affect the mouth.

Ann, you have made made a VERY VALID POINT when you say risk groups. when I question why my wife had never been tested for HIV until after going through 11 doctors, 2 hospitals, pneumonia, kidney failure, thrush seven times, numerous sinus infections, and losing 80, lbs, of her body weight, and being gravely ill for 4 years. I was told it was because we did not fit into any risk categories. what the !#!#$??? Makes you wonder why we go to doctors and not a psychic. Married 25 years, no other sexual partners, no drug use, and white. blood transfusions were not considered in a "risk category" because the blood supply is considered safe.

It really pissed me off too that I wasn't tested because I wasn't in a risk group. What a load of shit. Thank goodness I didn't infect anyone else during the four years I was undiagnosed, but it could easily have been the other way around.

I brow-beat all the doctors - nurses too - at my GPs practice about the risk group vs risk activity thing and urge them to urge all their sexually active patients to get tested regularly. How much they take on board, I don't know, but I always remind them. I hope they start taking my advice on board, even if it's just to shut me up.

I also talk to people in the pubs - mainly young ones, but people my age too, especially if I know they're newly single and back out there dating again. Lots of people - way too many - have stated that they never realised they were at risk. They always say "I assumed I wasn't in a risk group". I make sure I change their perception of what an hiv risk group actually is - that group of people who have had unprotected intercourse with anyone. And damn-it, that's got to be something like 99.9% of the adult population.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Routine testing sounds like a great idea until you see it as routine DIAGNOSIS. I'm in a state where currently there are Bills in the House and Sneate that attempt to REMOVE Written, infomrmed consent from testing for HIV in clinical sites.

Sure--test everyone--no more late diagnosis, right/ Well in the scenario proposed by my state, prople wouldn't even KNOW they had been tested unless they tested reactive (rapid testing). And this reactive test came about with NO consent or even understanding of what the test was, what the diagnosis means and the new impact that a reactive result has on insurance etc. SHow up at the ER with a sprained ankle, go home HIV positive, lost life and health insurance and your job is thinking about getting rid of you--all of this happend and you weren't even informed it could be a possiblility.

This also removes the responibility physicians have to discuss the test and risks for HIV with their patients. I've heard physicians testify at state hearings that this kind of conversation is too difficult.

Poor babies. Try getting a diagnosis without informed planning and consent to testing.

Yes, I believe that everyone deserves to know their HIV status via whatever technology makes sense for them. I DO however also believe that eveyone deserves to make an INFORMED decision about where and when they choose to be tested and to affirm that informed decision via a written acknowledgement.

In all of our busiest clinical sites that intgrated routine HIV testing in the US--we found that population based testing (people 13-64) can happen WITH informed written consent.

Sure--make more testing available and routine--just DON'T remove consent and the opportunity for us to formally document they we were given information about what the test and reuslts might mean.

The way your wife was diagnosed is very similar to how my wife was diagnosed. She received her diagnosis at 19 after being told she had 4 months to live because they told she had Hodgkins Lymphoma. The poor girl has scars all over her body from all the biopsies they did. Luckily one doctor put an end to all the madness by suggesting a HIV test.

Their reasons for not testing her sooner... she did not fit in a high risk group because she was 18 and only had one boyfriend.

skeebo1069, I hope she is doing well. I am sorry she had to go through that. Believe me: I understand!

She's eleven years in man and doing awesome! We have a two year old together and she handled the pregnancy so well, it was her first. I think she's pretty amazing to tell the truth. Not just for overcoming some odds she encounted and perservering through it all, but also her attitide towards life. She jogs daily and is working towards her masters in engineering. I'm very proud of her and also at the same time hate the fact that I don't always have the energy to keep up... it's all good though.

HEY, THAT IS GREAT 2 HEAR!quote author=skeebo1969 link=topic=29780.msg365451#msg365451 date=1257835036]She's eleven years in man and doing awesome! We have a two year old together and she handled the pregnancy so well, it was her first. I think she's pretty amazing to tell the truth. Not just for overcoming some odds she encounted and perservering through it all, but also her attitide towards life. She jogs daily and is working towards her masters in engineering. I'm very proud of her and also at the same time hate the fact that I don't always have the energy to keep up... it's all good though.

The States' procedures frequently include site visits and expert panels that notify the PWA/HIV's employer as part of the investigation into whether the PWA has or will endanger others. Other states explicitly bar PWAs from a wide range of procedures.

Because courts continued to uphold the dismissal of HIV-positive healthcare workers, the notification process endangers the PWA's job. See: